Month: December 2015

I was about 14 when my dad was diagnosed with early onset Alzheimer’s disease. The doctors attributed it to the belated emergence of effects from an accident he had when he was younger. For the next 10 years, I lived everyday seeing my father fight the disease and the family’s struggle to redefine normalcy, until he passed away in 2014.

I have a lot of respect for my mum. Raising three kids, holding down a job and being a caregiver was hard work. The disease really affected the entire family and it can suck you dry mentally, physically, emotionally and financially.

The illness was new to all of us and even my mum had a hard time trying to understand it, so it was difficult for her to educate us on it. As kids, 10 years ago, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone that came knocking on our doors to educate us. From understanding the diagnosis to coming to terms with it, learning on a daily basis what the disease does and what it robs from a person, balancing the caregiving with the urgent needs of the family, and simply experiencing the heartache of missing a person when he is right in front of you – it’s a lot to handle.

As we journeyed through my father’s battle with the disease, I could tell that my dad was struggling with a lot of confusion in the initial stages. My father used to be the navigator and driver for the family but one day he was caught in the crossroads and didn’t know which road to take, although it was a familiar route. Seeing that confusion and anger within him pained me. That was when I realised that he couldn’t do the things he could before.

He was also always fleeting between two states of mind, one of confusion and the other of clarity. There were times when I could tell that he knew he was losing his memory but was not able to do anything about it. And then there were times that he forgot that he was losing his memory and was thrown into confusion, lost and angry.

Losing him has made me think about the millions of other people who are affected by Alzheimer’s, who may not know what to do with their family members who have it; or feel helpless and hopeless in the long months and years of caring for someone who is slowly slipping away.

I wanted to draw from my experience to do something for him to live on in his memory. My faint memories of him were from a younger age and I never really got the chance to know him better as a person and as a father, before we had to finally let him go. Project We Forgot is partially a tribute to my father.

It’s true that we can’t control this illness or fight against time, as much as we want to. But we don’t have to let it get the better of us. This is why I’ve been inspired to create this community to tackle the need for greater awareness and support – one that offers a younger and fresher take on the disease while focusing on the digital generation, to build a community of support and to let people know what Alzheimer’s truly is by humanising the disease.

As I build this, I often picture myself as a teen and imagine how much of a difference having such a community of support would have helped me and my siblings when we were going through my dad’s illness. I hope that this space will allow caregivers to find their place to identify and connect with other individuals who might understand what they are going through. And especially to the younger ones, for them to know that they are not alone, to know that it is ok to speak out about it, and to use their journey to inspire others.

On Saturday 5 December, patients from across the world will join together to celebrate Patient Solidarity Day and declare that healthcare is a human right.

Leading patients’ groups from six continents will host a range of events to raise awareness among the public and will urge decision-makers to respect, protect and fulfil patients’ rights at every level of care. Events will include marches, free health screenings and meetings with ministers to change perspectives around health and improve the lives of patients.

A call to action

The World Health Organization states that every person has ‘the right to the highest attainable standard of health’. This is not always put into practice. Many patients are unaware of their right to the healthcare they need, and many healthcare providers – from governments to frontline care – fail to fulfil their duty of providing adequate care.

It is time for patients and providers to recognise that healthcare is a human right. This right is protected by the International Human Rights Framework, a body of international law that outlines and upholds the basic rights of every person. This Patient Solidarity Day, patients will stand up for the healthcare they require and remind healthcare providers of their responsibilities at every level.

Kawaldip Sehmi, CEO of IAPO, said:

‘All of us should have access to the healthcare we need: good quality, affordable care without fear of discrimination. Healthcare is a human right for all. We call on individuals, organizations and institutions to ensure that health systems are designed and services delivered to meet the needs of patients.’

Patient Solidarity Day was created by the Morris Moses Foundation in 2011 and has steadily grown since. Last year’s event, coordinated by IAPO, marked the first year as a global campaign and saw 80 organizations from 32 countries take part. This year’s theme continues the legacy of previous years by raising awareness around the rights of patients and placing them at the centre of healthcare.